Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard
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Survey deadline today (March 1st)

Discussion in 'Institute of Medicine (IOM) Government Contract' started by M Nosson, Mar 1, 2015.

  1. M Nosson

    M Nosson

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    I don't think this has been posted here yet...
    Some of you may have seen or participated in surveys on the SEID name proposal.

    This survey is possibly different than the one you have seen.
    It is co-sponsored by MEadvocacy.org and ParadigmChange.me.

    Here is a page of information about it:
    http://paradigmchange.me/wp/name-evaluation/

    It takes 4 minutes, to fill out, is interesting, and non-Americans as well as Americans are very much welcomed and asked to participate, I am told.

    I think it's a good survey for gauging patient response to the name. Apparently over 1060 people have already participated. It seems like the more responders, the better, so...

    Please consider taking this survey if you can! :

    Here is the survey link:
    http://www.surveygizmo.com/s3/2020116/Evaluating-the-IOMs-Proposed-Name-for-MECFS
     
    Sparrowhawk, ukxmrv and ahmo like this.
  2. Kati

    Kati Patient in training

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    This survey is unbalanced. results will be unbalanced. results are not representing me. I refuse to participate.
     
    Cheshire likes this.
  3. Cheshire

    Cheshire Senior Member

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    Totally biased.

    But nowhere could I find a page where they try to understand the positive aspects of the new name So they won't find any....


    This type of unbalanced polls is not what I'm expecting of an organization supposed to help ME/CFS/SEID sufferers, whatever you call it, I don't care (heu, really don't like CFS) I want a cure!


    What we need is promotion of science, fundraising, spreading of knowledge.

    Those we need to counteract are not the members of the IOM panel, but those promoting a psychogenic explanations for that disease.



    (And believe me I'm not enthusiastic about this new name, but I think there are positive elements in it)
     
    Last edited: Mar 1, 2015
    Kati and John Mac like this.
  4. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    I am the developer of this survey.

    Some people are being asked only about positive elements, and some people are being asked only about negative elements. Some people are being asked about both.

    The direct link above is incorrect. Here is the correct link:

    http://www.surveygizmo.com/s3/2021068/rev-Evaluating-the-IOM-s-Proposed-New-Name-for-ME-CFS


    The report of the survey findings (including comments) will be delivered to HHS, CFSAC, other government officials and the media. It also will be released publicly.

    Thanks much for your interest.

    Lisa Petrison, Ph.D.
    Paradigm Change
     
    Last edited: Mar 1, 2015
    Wally likes this.

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